Confused over diagnosis and where to go next

[Bungle]

Hello

I was diagnosed with vulvodynia about 14 months ago by a gynaecologist and was told that the nerves in my vulva have become hypersensitive with no known cause. My symptoms began during the last few days of a strong triple therapy course of antibiotics for suspected Helicobactor Pylori infection when I began to get severe itching in my vulva. Thinking I had developed vaginal thrush from the antibiotics, I tried some Canesten thrush cream which did nothing to relieve the symptoms and I think made them worse. I then tried a vaginal pessary in the hope that this would help. After that, I began to get a strange feeling of something being stuck in the lower part of my vagina and crawling feelings across my vulva which felt like a trapped air bubble or something moving around. The itching also did not stop. After many visits to my G.P. (who thought I had a trapped nerve in my vagina) and said it might just go away, I referred myself to a gynaecologist and after many frustrating visits was diagnosed with generalised vulvodynia.

I have been following this forum ever since my G.P. said I may have a trapped nerve as I have always suspected that I have pudendal neuralgia (stemming from the dorsal branch of the pudendal nerve). When I mentioned this to the gynaecologists, they kept saying that I do not have pudendal neuralgia even though they agree that my symptoms are nerve related. However, I have read many articles saying that if your vulvodynia symptoms are nerve related, then it may be pudendal neuralgia.

I still have these same symptoms and sometimes get feelings which I can only liken to a foreign object being stuck in my vulva or a clothes peg on my clitoris! I find it difficult to walk without wearing underwear as the inner part of my labia is hypersensitive and I can feel it uncomfortably rubbing as I walk. If I wear underwear, I get extreme itching/prickling over my labia/vulva/clitoris area. I also get a lot of slow crawling feelings and irritating tickling feelings. I do not seem to have any 'pain' as such, just severe irritation in the vulva/clitoris which I am pretty sure is nerve related. I also do not have pain on sitting, although I very occasionally will get stabbing pains in the left side of my perineum. I have no problem inserting tampons, but have not tried intercourse with my husband as I know that the friction on my vulva will cause me a bad flare up.

I am very confused as my symptoms don't seem to be typical of vulvodynia (i.e. no soreness, burning, pain on intercourse, pain at entrance to vagina etc.), but I also don't have the typical sitting pain associated with PN/PNE.

I was prescribed amitriptyline to try for 3 months at 10mg, gradually increasing to 30mg which I did not want to take because I am desperate that they try to find the cause of the problem and not just treat the symptoms. I eventually buckled and tried the 10mg, but got very bad twitching and involuntary muscle movements when I tried to increase to 20mg. I came off them 4 months ago and still have these symptoms, so I am worried about trying anything else similar.

I am at a loss of what to do next. I don't feel I am getting the appropriate care and am not sure if I've been misdiagnosed. I feel as though the people I am seeing have little knowledge in this area and are not really doing much to try to find a cause. My G.P. previously tried to get me a referral to Dr Baronowski, but we received a letter back from him saying that I should go to gynaecology at my local hospital who may then refer me to chronic pain management, which is where I am at now. I also managed to get a referral via physiotherapy (for a chronic back/pelvic problem I have had for 3 years) to a women's health physiotherapist, but this has not yet made any improvements to my condition.

Can anyone suggest anything to help me? Are there any good vulval clinics in the UK that specialise in both vulvodynia and PN and would do investigations into the cause and not just give me medication which I am unable to tolerate.

Sorry for my long rant!

Thank you.

[Rosemary]

Professor Wendy Reid who is in London. i have not been to see her but she was recommended to me as a top specialist.

Rosemary

[Bertie]

You can pay to see Dr Baronowski if you want to get some idea of what's going on £400.00 for an hour very thorough but no bedside manner. Professor Wendy Reid is a vulva specialist.....if it's beyound her she refers to Dr B anyway.....I am going to the Vulva pain society day on Saturday and Dr Nunns is the speaker he is also a vulva specialsit and started the vulva pain society.......I am going to,pay to have a vulvoscopy just to cross the ts and dot the Is......as in my opinion they can't see the vulva properly when they are looking from your knees. If we where in the US they would have done that by now.....I suggest you see Dr Anna Pallecarous who is an amazingly thorough sexual health specialist......not that you have a sexual condition but she will look for things that the NHS and gynaes just don't.........a dermatologist for the vulva who Dr Anna recommends is Dr Clare Fuller.....all of these are in London......I have had to pay to see all these 0%credit card, as the NHS is just not up to this sort of thing.......also is your bladder OK? If not but you are told you don't have a UTI then you probably do a UTI of the bladder wall the man to see there is Professor James Malone -Lee......also what age are you? If over 40 you will be Perimenopausal and it could be a hormone problem......Dr Annie Evans Bristol......or The Surrey Menopause Clinic that's where I am having my vulvoscopy done........then there are the physios.....I have seen Dr Ruth Lovegrove Jones.......Maria Eliot......I am going to The White Hart Clinic in London to have an ultra sound of my pelvic floor to see how tight my pelvic floor is....and how bad my prolapses are......with the physio Christine , there is also Helen Keeble there who has a good name also.......there is also something called restorative exercise which I am going to start in August ( daughter getting married ) the guy who does that David McCoid is also in Bristol......he teaches the Katy Bowen way...he had PN for 14 years........I have not had any nerve blocks as in my opinion and resaerch they do more harm than good........app the names I have put up are the best that I have found the UK has to offer.....there are no immediate cures .....the tampon feeling is probably PFD also pelvic floor dysfunction from being over tight......you need to flop and drop the pelvic floor.......reverse Kegels.......I am not on any of the pills as the ami gave me palapatarions......all the best to you...as genital problems are the pits......also if you think you have thrush again go straight to your GUM clinic they know far more than the GP.....that could be your starting point if you wanted no appointment needed.x

[Bungle]

Hi Rosemary & Bertie

Thanks so much for your very helpful replies ... I'm really grateful for your time & help. I've got an appointment with Wendy Reid tomorrow at Harley Street - had a good chat with her secretary Susan who was really helpful. If Wendy can't help, she will refer me elsewhere. I'll have to also pay for this on my credit card as I just don't have the money to do it any other way (spent too much on experimenting with underwear etc, fragrance free products etc.) but hopefully I may be able to get further treatment if needed on the NHS, although I'm not sure! Well its a good place to start anyhow.

As you say Bertie, it could be a number of things so I'm hoping I'll get some answers to exactly what I have and how to take it further. I don't have bladder problems, so thats good, but I'm 42 so it could possibly be a pre-menopause issue as you say. I already do the flop & drop of the pelvic floor as I saw Maria Elliot a while back who suggested these, but the stretching exercises in the Amy Stein book she gave me just flared everything up (including my back pain!), so I stopped going (maybe too soon). My current women's health physio on the NHS is going to assess my pelvic floor at my next session, so maybe this will shed some light.

I'll post an update after my appointment tomorrow.

I wish you both the best ... I know how distressing these problems are and how helpless it can make you feel, but not giving up hope!!! Its nice to know I'm not alone, but wish we all could be cured.

xxx

[Rosemary]

Hope the appointment went ok Bungle.

Sorry i missed your post last night as i would of suggested typing up and printing out all your history in short form to take and give the piece of paper to a specialist. This is something i did - not all of them wanted it -some copied it or kept it - but at least i had something to refer to or knew that i hadn't left anything out that i wanted to say - i find it not always easy to remember things when in pain.

Rosemary X

[Anna]

Hello,

Your symptoms are very similar to mine, and my condition also started after using a commercial cream (for me, during a yeast infection).

Did you get anywhere with Wendy Reid in Harley ST?

Thanks,
Anna